A teenager from Stapeley who’s battling a rare and debilitating disease is preparing to take part in a charity skydive and says the 15,000ft free fall will be ‘the best seconds of my entire life’.

Jack Carter, who turns 18 in September, was diagnosed with Friedreich Ataxia – a rare, genetic neurodegenerative condition – when he was 10 and was just 14 when the illness forced him into a wheelchair full-time.

But on Saturday (August 1), the brave teenager will be taking to the skies with his equally brave 64-year-old grandma Janet Barham and a group of four friends – who he’s known since they were all pupils at Weston Primary School – as they each take part in a tandem skydive.

The day will be especially poignant as it will be the 45th birthday of Jack’s mum Deborah Taylor, who is battling breast cancer for the second time.

The adrenaline-filled challenge is being held to raise funds for Ataxia UK which is working to find treatments and cures for the condition, which affects one in 50,000 people in the UK.

Deborah said: “Currently there is still no treatment or cure to slow down and reverse this debilitating illness that slowly, day by day, month by month, and year on year robs Ataxians like Jack completely of their independence – making them completely reliant on others for everything we all take for granted.

“Clinical trials are underway, but like all rare diseases funding is critical for a drug to be discovered, tested for safety before finally taken to market to stop and reverse progression.”

‘The Jumping Jack Sevens’ challenge has so far raised more than £3,000, but Jack and his family are hoping they can reach their £7,000 target.

“It was Jack’s idea to do the skydive,” said Deborah. “We did some fundraising about four or five years ago and hosted a charity ball at Crewe Hall, which raised over £15,000. Since then we’ve been wanting to do something else, but due to my ill-health we hadn’t been able to organise anything.”

She added: “Jack’s getting nervous now, but he’s also quite excited. What’s driving him is the fact it’s helping to raise funds and that we’ve already raised so much.

“Jack’s grandma’s philosophy is that if Jack can do it then so can she. She’s looking forward to it.”

The skydive will take place at The Black Knights Skydiving Centre in Lancaster.

A Just Giving web page has been set up for anyone wishing to donate.

A message on the web page from Jack, a student at Newcastle-under-Lyme College, reads: “Does the struggle just to get through each day make people with FA (FAers) like me more fearless?

“Does being captive in our wheelchairs make us hungry for the ultimate physical freedom? Are we drawn to doing things that not everybody does because it defines us in some way, rather than just being ‘that guy in a wheelchair’?

“Or do we just think – what the hell, life’s too short so why not just go for it! For me it’s probably all of these and I know that the 15,000ft of free fall are going to be the best seconds of my entire life because during these moments I will be free, brave and so very, very happy!”